Hi Steve I was diagnosed with MM but I discovered through trial and error that I had MAV too. I suppose I still have MAV but I avoid all the food and drink triggers that brought the attacks on. Haven't had an alcoholic drink for 9 years but its worth it to be well and potentially I could live longer too. Some experts believe that menieres is really MAV. Alot of information here on MAV. Not nice is it any form or strain of this horrible affliction but alot of people improve. All the best
@ SteveB From this site, I started on JOH regimen first. Was on that for about 4 weeks then convinced my MD to let me try AV's. She prescribed acyclovir even though I lobbied for valacyclovir. After 5 weeks on the full Gacek dose, I felt that since my symptoms were drastically better, rather than lower my dose on acyclovir, I should pop over to Gacek's preferred medication. Now 3 weeks on full dose of valacyclovir, I feel stabilized, a hearing test a week ago showed significant improvement but the tinnitus is still loud most of the time, the fullness rarely an issue and vertigo was never my issue. Since I am reluctant to reduce my dose now, my MD is referring me to another ENT with more MM experience. So the net is that through dietary trigger studies on self, insisting on rigorous am walking almost every day, being 99.9% true to the JOH regimen, and the AV's, I am a world ahaed of where I was when the diagnosis came down near September 1. I encourage you to give anything at least 60 days before drawing any black and white conclusions and that for most of us fluctuations in wellness will continue regardless of how spot on or disciplined we are. Keep us posted!
Hi Everyone I'm almost 2 weeks into the antiviral trial and as promised. Update 1) Hearing loss: Still fluctuating wildly but fluctuating in the right direction. However there has been some very bad days too (its bad right now). Distortion: Seems to be cutting in and out throughout the day but generally speaking I've had the clearest hearing in months. I've even been able to listen to music in glorious stereo! Again, I've has some really bad moments too. Fullness: None, zilch, nothing! - its worth noting that fullness is only a minor issue for me Tinnitus: Probably the same, so fluctuating tone and volume it is then. I'm trying not to raise my hopes too much due to the unpredictability and randomness of this damn thing, but here's hoping!
Week 3 on antivirals just rolled by and time for an update... Not good news I'm afraid as all my usual symptoms have been worse than usual, so: Hearing loss = worse Distortion = worse Tinnitus = worse Dizzies = worse fullness = better Still early days so I'll persist. Steve
Believe I was on the full dose for two months before I started the taper down. I was seeing some days with improvement and some not - but to have any days of improvement was better that I had so I wanted to keep trying. It continued to improve and stay more reliable. I still have some bad days but so far so good. Believe the longer this disease has been with us, the longer for the av to work (which makes sense). Good luck
Yesterday ended on a high note, hearing was good, no fog horn going off in my head and not a dizzy to be seen, went to bed feeling optimistic. but.... there's always a but with this stinking disease... I woke up this morning and my hearing has almost gone, audiogram shows worst ever This bloody thing is so cruel!
Steve, you are on week 3, which means you are on 1g 3 times daily? if 3 times daily, what time intervals are you taking daily?
Enjoy, I'm still on 2800 mg per day. I take 800mg at 6am, 1pm and roughly 7pm. I also take 1g L-lysine at the same time. I'll be tapering down later this week. Steve
When i was on 3g per day. I was taking it at 7am, 3pm and 11pm daily, i did not get enough sleep at time during those time, i post this reply FYI.
Sometimes its hard getting the intervals right, life sometimes gets in the way ;D Enjoy, after your initial 3g period did you notice any difference, good or bad?
Steve, similar to Enjoy, when I was on 3x daily I took my 3rd dose before bedtime. I read somewhere that the body does it's best work on building the immune system while sleeping so perhaps ensuring that it has the "extra" during the night helps? I would ask the doctor if you could continue at full 3x dose for another full cycle before tapering. My doctor said it would not be harmful and that extra month on full loaded dose made the difference.
Steve, yes, like nicmger, if you have followed my thread on my journey to Valtrex, I have prolonged my 3g daily from 3 weeks to 5 weeks before I taper it down to currently 2g daily on my 2nd week now. I had a lot of hesitation initially about prolonging the first 3 weeks as it was weighing down on me financially. As each of us, varies differently, if you are not sure about prolonging (and plus the $$$ cost), my suggestion is to check with your doctor about it. And lastly, be more confident and strong in yourself. Hope you get well soon.
Hi Enjoy, Just finished reading about your journey... I see that we have the same major issue, that is, massively fluctuating hearing loss. I wonder how you cope on the bad days?